Personify the Disease

This week's 15 minute video by Pat Snyder, author of Treasures in the Darkness and LBD teacher, talks about making the disease the third person in the room. "It's Lewy, not my loved one." Or to a loved one: "Lewy is messing with your ability to talk." Blaming the disease makes it easier to deal with difficult behavior. It also decreases your loved one's frustration.

But she also talks a lot about some other very important things, including improv acting , being legally prepared and the value of sleep. I hope that eventually she'll do a video about each of these subjects because they are also very important.

Click on the title to watch the video:  Personifying the Disease.

Next week, Pat talks about Showtime, a common LBD symptom that often goes unrecognized even by the medical community.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

LBD's Five Ps

This week, Pat Snyder, author of Treasures in the Darkness and LBD teacher, talks about LBD's Five Ps. Pat's primary mission is to make your dementia journey more gentle for everyone. In this one, Pat teaches us five ways to act to maintain a safer, more gentle environment. (Remember YOU can make choices. Your loved one can't--they must simply react to the first urge they get.)

• Be positive
• Be proactive
• Be perceptive
• Be persistent
• Personify the disease

Enjoy this 8.5 minute video by clicking on the title: A More Gentle Dementia Caregiver Journey: The 5 P's.

Pat has already expanded on one of these parts: Personify the disease. That will be next week's video. I hope that eventually, she'll do a video on each of them.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

LBD's Five Moving Parts

This week's video is from Pat Snyder again. It is actually her first video about living with her husband John, who died with Lewy body dementia in 2015. She's been teaching and writing about LBD since well before that and her videos are well worth listening to. In this one, Pat describes five major symptoms of LBD in alphabetical order--to make them easier for you to remember. A couple of comments:

• I find it interesting that she connect behavior and mood. There is definitely a connection and but I've usually listed them separately.
• I teach that LBD is more of a thinking disorder than a memory disorder. Pat also discusses how LBD's cognitive issues are different from the memory loss common with Alzheimer's.

I could go on making comments but I think the best thing is for you to just listen to Pat's video. Jim and I may teach about LBD a little differently, but we definitely agree with everything she says. I especially like her final statement. "Of all dementias, LBD is the most responsive to treatment--as long as it is the right treatment." What a positive ending!

Click on the title to see the video: Five Moving Parts.

Next week, Pat again goes alphabetical and talks about the Five Ps.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

The Nightmare of Poop

For the next few weeks, I've invited Pat Snyder, author of Treasures in the Darkness, to talk to us via Youtube. Her first video is about a subject that most dementia care partners have to deal with eventually and one that can be very stressful. In fact it was several stressful entries in an online support group that prompted Pat to make this video. Right now is a fairly stressful time already and we don't need more stress. I hope that her suggestions help you to limit the stress in your life--and your loved one's!

And so set aside 20 minutes to sit back and relax while you watch Pat's video on The Nightmare of Poop.

Next week, Pat will be back with another video.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Dealing with the Isolation

We know a lot of you are dealing with how to care for a loved one at home with little outside connections.

• Do keep up with your friends and support people by phone. Consider a phone tree, where each of you is responsible for calling someone in your group and reminding that person to call whoever they are responsible to call.
• Do use viewing programs like Skype, FaceTime or Zoom to connect with friends and groups.
• Do learn to order online and have your supplies delivered. Deliveries are often free right now.
• Do stay safe, and abide by all the safety measures they are asking us to use--hand washing, etc.

We know others of you are dealing with having a loved one in a care facility that you aren't able to visit.

• Some care partners say they have found that they can work with staff to have their loved ones at a window so they can wave and at least see you for a while.
• Some care partners are choosing to move into the facility and sleep on a lounge chair next to their loved one's bed. Care facilities may allow this, especially if it makes less work for them. But you will have to abide by their rules and you won't be able to go in and out as you normally would.
• Make daily telephone calls if your loved one can still use a phone. 
• Staff may be able to help you set up Zoom or FaceTime meetings but they are awfully busy right now.
• Give staff extra kudos...bake them cookies, send them cards, let them know how much you appreciate them. A staff that feels appreciated will treat your loved one better--it's just human nature!

These suggestions aren't anywhere near the whole answer and they may not even help you at all. If you have found something that does, be sure to write a comment here and I will publish it. Be aware that I don't publish anything commercial or anything with a website link in the comment.

In the meantime, stay safe.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Easter Sunday

Last Sunday was Easter. It was a different experience for us. We went to church online. We heard familiar voices saying needed words of encouragement and sang along with familiar songs to lift our spirits. We missed the greeting and meeting that goes with church in our minds, but we appreciated the chance to commune with the more than one hundred people who participated online with us. We hope you had similar experiences on this special day.

That service reminds us of how we all must learn new skills and new ways of connecting. We, as humans, need to connect with others and that is more difficult right now. But we can make phone calls and send emails. We can learn to use Zoom for gathering in a group. I'm sure there are other ways too that this once computer savvy but now way behind the times senior doesn't know. Give them all a try and use what works!

LBD care partners have an extra challenge in that their loved one may not understand what is happening. LBD tends to make groups confusing and so your loved one may actually appreciate social distancing and quarantine. Take this as a gift; one less thing to be concerned about!

Another gift for me is the appreciation I have for those I do connect with. I don't take this so casually anymore. Feeling grateful is very healthy and I've had a chance to feel grateful a lot lately. Sad, too, I admit, and concerned for our country as a whole and for individuals who are dealing with much more difficult situations than we are.

By the way, we welcome you to comment. If you add your phone number I will call you, so that you can ask questions, share experiences or just connect with another human. Since I review all comments first before posting them, your number will stay private and your comment will only be posted if you want it to be. Also,  we do not post any message that includes another website link.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Hallucinations, Pt 2: Management

This is the second in a series of three blogs about hallucinations based on Tanis Ferman's presentation at the 2019 ILBD Conference.

First, let me repeat that hallucinations only need management if they are distressing to your loved one. If they are distressing to you, this means that you need to find a way to accept your loved one's behaviors. Otherwise, he/she will pick up on your negative emotions and mirror them, with a likely increase in hallucinations or worse, in their intensity.

However, if a hallucination is stressful, there are some ways to help your loved one de-stress. This week, we are focusing on what Tanis calls "solution-focused management," which involves identifying patterns and triggers.

Once you know about the trigger, it is often easy to solve the problem. Even more important, it is often possible to prevent the behavior by removing or avoiding the trigger. For example, Iris, tells about her husband Eric, a Vietnam veteran, who becomes violent when he "sees" war battles and delusionally believes that he's involved.

How is this is a problem?

• It's a problem for Iris because she's afraid she'll be hit.
• It's a problem for Eric because he thinks he's being attacked by the enemy.

When does it happen?

• It is most often the result of a dream that wakes Eric up acting out what he had been dreaming.

Where does it happen?

• In bed.

What happens before and after?

• They often happen after a physically exciting scene on TV. It doesn't have to be about war. The last time, it was a football game.
• After Eric wakes up fighting, Iris leaves the bed.

Who is around?

• Usually only Iris. But it was triggered once, when an old buddy showed up and they got to reminiscing.

These answers tells Iris that she needs to monitor Eric's TV watching and ask his buddies to be careful what they talk about because both of these appear to be triggers. She also probably needs to find a different bed to sleep in. Emotion-based solutions may not be helpful with this type of issue because, with almost immediate violence involved, Iris will be less able to get past the negative emotions to where Eric can hear her. Her best solution is to limit the possible triggers and make sure she is safe.

Likely Triggers

• Physical: Medications, dehydration, infection, not enough  exercise, pain, constipation, sleepiness, alcohol, mood.
• Environment: Clutter, lighting, cues (TV), move misperceived objects
• Task demands: Task too hard, causing stress, or too easy, causing boredom.
• Fluctuations: Not actually triggers, but if you are aware of your loved one's pattern of fluctuations, you can usually choose activity times for when he/she is more aware which will decrease stress and increase awareness.

Next week's blog will be about dealing with hallucinations via what Tanis calls emotion and communication focused management.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.